Canadian Network for Personalized Interventions in Intellectual Disability

Project Description

Challenge

Intellectual disability (ID) affects 800,000 Canadians and is defined by challenges in cognitive functions and daily living activities. Individuals with ID frequently struggle with other issues such as anxiety, autism, epilepsy, sleep problems, and difficulty living independently. But managing an ID diagnosis presents many challenges: individuals must discover which resources are best for them, and how to go about accessing those supports.

Project Summary

To help patients, families, healthcare and education professionals navigate these challenges, a KBHN research team led by Dr. Bolduc is creating the Canadian Network for Personalized Interventions in Intellectual Disability.

As part of this cross-Canada initiative, the research team will consult with individuals with ID, parents, and healthcare and education professionals, to develop a knowledge base report on needs and barriers. They will then recruit expert geneticists, biochemists, molecular biologists, psychologists, and machine learning experts to help identify biomarkers of ID symptoms. The Network will also gather scientists, drug companies, and experts in clinical trials, to discuss how new tools can effectively measure the effect of potential interventions.

Result

The eventual aim is to develop three innovative projects. The first is a personal assistant/coach prototype for personalized care, which can provide targeted interventions and improve functioning for individuals with ID. The second is a national ID database and biobank, which will allow researchers to synergize their efforts and foster the development of new therapeutic options. Finally, the Network will hold a symposium and report on the success of interventions in ID in clinical trials.

By collaborating with the top experts in Canada, the Network will be able to assess the impact of ID on individuals, families and society, and ideally develop projects to improve the lives and outcomes of people with ID.

Funding

KBHN: $100,000

Partners:$259,940

Team

Principal Investigator

Francois Bolduc, University of Alberta

Co-Investigators

Keiko Shikako-Thomas, McGill University
Michael Paulden, University of Alberta
Michael Shevell, McGill University
Lonnie Zwaigenbaum, University of Alberta
Gail Andrew, University of Alberta
Sebastien Jacquemont, Universite de Montreal
Kim Boycott, University of Ottawa
Mariam Oskoui, McGill University
Sarah Lippé, Université de Montréal
Francois Corbin, Université de Sherbrooke
Nahum Sonenberg, McGill University
Lawrence Richer, University of Alberta
Evdokia Anagnostou, University of Alberta
Clara Van Karnebeek, University of British Columbia
Arnaud Droit, Université Laval

Collaborators

David Wishart, University of Alberta
Carrie Demans Epp, University of Alberta
Veronica Smith, University of Alberta

Partners

Women and Children’s Health Research Institute (WCHRI)
Canadian Autism Spectrum Disorders Alliance (CASDA)
International Business Machines Corporation (IBM)